Ugh..another yucky Dr.s apt./

[Guest guest]

,

You have to keep " kicking against the pricks " . My sons Neuro told me

the same thing several years back. This year he just completed the

second grade and his teacher advised us that he is the best reader in

her class (which btw is a regular grade school non-special ed. class

in a private school that happens to have a great teacher/student

ratio). You can't buy into what they are saying or you will lower the

bar for your child. You will know what your child is capable of

doing. Trust yourself and lean on the sustaining infinite.

[Guest guest]

-

Don't listen to his predictions. They also told us Savanna would probably

never talk except ot echo some words (seizures and dd due to TSC). There are

now some days we would love to tell her to " shut up " as she talks nonstop-most

of the time in sentences(Pronouns not always used) but she most definately is

understandable. She's also reading, and with support can write her name. She

didn't start talking until 3.5-4 yrs and then it was only single sounds and

simple 1 syllable words.

Kathy/WI

[Guest guest]

-- My sister's nephew didn't say his first word until he was 3

yr. He graduated college a few years ago with an engineering degree &

has a beautiful wife & two kids. The gold rings are out there -- keep

reaching!!

Kathy - 's Mom

On Thu, 12 Aug 2004 14:01:12 -0500 " kathy " doyung@...> writes:

> -

> Don't listen to his predictions. They also told us Savanna would

> probably never talk except ot echo some words (seizures and dd due

> to TSC). There are now some days we would love to tell her to " shut

> up " as she talks nonstop-most of the time in sentences(Pronouns not

> always used) but she most definately is understandable. She's also

> reading, and with support can write her name. She didn't start

> talking until 3.5-4 yrs and then it was only single sounds and

> simple 1 syllable words.

>

> Kathy/WI

>

>

[Guest guest]

-

I'm so sorry about your recent appt. with the local neuro. What a jerk! I

agree with 's reply...you can't predict the future and if you believe

is going to be ok and you ARE seeing strides in development, that is

definitely a positive! And the no talking thing... is starting to say more

words slowly but surely. I think it takes awhile for these kids to get their

bearings once off all meds...there's so much more for their little brains to

take in! And they need to comprehend things before they can be expected to

express themselves! We have a friend that is a counselor who didn't speak till

he was 3 and he is about one of the smartest men I know!

I have been meaning to write since I saw you were back from vacation. It seems

that is doing TONS better! That's great. We had an appt. today with our

neuro. at Strong...just a 6 month check, no eeg till Nov. I was kind of hoping

for one today though, since he is now off all meds and doing even better. By

then though he will have been on the diet a year and I'm wondering if we will

start to lower the ratio at all.

I thought you mentioned in a previous post that you had an appt. this month with

a new keto team? Was just wondering if you were going to Rochester or if it was

a new team in NYC.

Anyway, glad to see that things are going well for (despite that jerky

neuro.) Big hugs to him!

- mom to 2 and 1/2, ketokid since 10/03, seizure free since 11/03,

med free since 7/04

" M. " mcpitza@...> wrote:

,

You have to keep " kicking against the pricks " . My sons Neuro told me

the same thing several years back. This year he just completed the

second grade and his teacher advised us that he is the best reader in

her class (which btw is a regular grade school non-special ed. class

in a private school that happens to have a great teacher/student

ratio). You can't buy into what they are saying or you will lower the

bar for your child. You will know what your child is capable of

doing. Trust yourself and lean on the sustaining infinite.

" The Ketogenic Diet....a realistic treatment option, NOT just a last resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional keto

team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

My sister...now 35, didn't speak until she was 6. She was premature, with

seizure disorders. The neurologist and other doctors painted a pretty sad

picture for my parents. My sister is now a special ed teacher working on her

PhD. She is a smart, wonderful, articulate and lovely sister, wife, mother, and

teacher. Excuse my language, but screw those doctors! You, your family, and

's strength are all you need to succeed. Keeping fighting.

Re: Re: Ugh..another yucky Dr.s apt./

-- My sister's nephew didn't say his first word until he was 3

yr. He graduated college a few years ago with an engineering degree &

has a beautiful wife & two kids. The gold rings are out there -- keep

reaching!!

Kathy - 's Mom

On Thu, 12 Aug 2004 14:01:12 -0500 " kathy " doyung@...> writes:

> -

> Don't listen to his predictions. They also told us Savanna would

> probably never talk except ot echo some words (seizures and dd due

> to TSC). There are now some days we would love to tell her to " shut

> up " as she talks nonstop-most of the time in sentences(Pronouns not

> always used) but she most definately is understandable. She's also

> reading, and with support can write her name. She didn't start

> talking until 3.5-4 yrs and then it was only single sounds and

> simple 1 syllable words.

>

> Kathy/WI

>

>

[Guest guest]

,

I couldn't put it better than .

Just you and prove that idiot wrong!

Hugs to

Saro....Rohan's mum

langansmom wrote:

>Oh, . I am soooo sorry that you had to hear that. Not

>because there is any small bit of truth to it- but b/c that IDIOT who

>thinks he is God has ruined your day and given you doubts for no

>reason. Ugh. If I could, I would smack him for you!!

>

>PLEASE don't let him get to you. Please. Then he wins. He has NO

>idea what is capable of. There is NO scientific data to

>support what he says. IGNORE HIM. And I do agree that finding

>someone with a little more sense might be best for and for you!

>

>I have a friend at home who had her daughter at just over 20 weeks

>gestation. Her daughter weighed right at a pound and was in the NICU

>for 4 months. They told her she would never make it. She did. When

>my friend brought her to the doctor for check ups, she would go in

>all excited. " Look at my beautiful daughter. You said she wouldn't

>live but she did, and she is so beautiful and so sweet. " And they

>would crush her- " Yes, but she's not doing this and she's not doing

>that. " She would leave those appointments in despair. They told her

>when her daughter was 2 that MAYBE they would be able to teach her to

>sit quietly in a corner but that was the best they could hope for.

>They said she would never talk or read or anything. It was so cruel.

>

>My friend refused to believe it. She is a school teacher and worked

>so hard with her daughter. She got her into EI and fought for

>everything she knew she needed. She worried that her daughter would

>never say " mama " and that broke her heart. She kept hearing about

>how behind her daughter was, and every time her daughter learned

>something new, instead of celebrating the docs would remind her of

>all the things her daughter SHOULD be doing.

>

>Fast forward 12 years. Calin is a beautiful 8th grader. She didn't

>speak until she was 4, but you can't shut her up now! She reads as

>well as I do. She beats me in basketball every time I go home. She

>loves Hillary Duff and is a shopping fiend. Yes, she is in some

>special ed for oral/motor speech delays, but her speech gets clearer

>by the day and whereas I couldn't understand her sometimes in the

>past her speech is now so clear to me. She still gets ST and OT. If

>you saw her, you would never suspect that she was the little girl

>that they MIGHT be able to teach to sit quietly in a corner. In

>fact, she just attended her first school dance.

>

>All that to say DON'T GIVE UP. Each kid is different and they will

>do what they will do. I know how great is doing. He is

>Langan's and my roll model!! So hang in there and know that you are

>his best advocate. And NEVER let some idiot in an ivory tower bring

>down your expectations for that wonderful little guy!! Remember- the

>sky is the limit!

>

>Hang in there and know we're thinking about you guys and wishing we

>could punch that neuro!

>

>, mom to Langan, 2 yrs old and keto kid since 11/03; med free

>4/2/04 to 8/7/04 but now slowly weaning from keto and trying

>trileptal b/c of severe metabolic acidosis.

>

>

>

>

[Guest guest]

Dear

I formerly was a special education teacher during the years when impaired

children were in classrooms that were labelled according to primary disability.

Now challenged children are mainstreamed with support staff assistance.

Anyway, I had a dear sixth grader, . When she was born and as a baby her

parents were told to institutionalize her. She was considered a " vegetable " by

these professionals. Her parents opted to keep her at home. They worked with

her and got her the few services that were available at that time. It was a

long time ago, without the services that are now available to special needs

children.

Anyway, was kept at home and not institutionalized, and she became far from

anything the doctors had predicted she would be. She was a darling girl. A

fair student (You know, all students aren't at the top of the class!) A

conscientous worker. I just loved having her in my class.

Years later, after my father died, I had reason to speak with 's father, as

he was my father's attorney. When I asked about , now in her mid thirties,

I found out that she was assistant manager of a store and worked part time with

the disabled. Not only was her life a success, but she was helping those who

needed help!

Only God knows our futures and what is ahead for our children. If we are

dilligent to do what we know to do, that is all that is required. And what is

" success? " How is it measured? How do we measure worth? Is a child with

special needs worth less than one without?

I would think that the doctor's inability to help your child caused the doctor

to " write him off. " Instead of facing up to the fact that he did not have all

the answers, it became your little boy's problem.

We all have our children on this diet because they were not able to be helped

with conventional methods. And, we are finding the diet to be a wonderful

alternative to the drugs and all their side effects. The diet can be

supplemented. The meds, we just watched for the side effects.

Expect the best. Challenge and encourage, but don't frustrate your little one.

He will grow and with maturity comes learning, and more learning, and more

learning. God bless him.

Blessings....... , mum to dear , age 5

michelle paulson michelle101291@...> wrote:

I don't know if I'm more mad or upset. Just got back

from our local neuro. (only rarely consult w/him to

keep him updated for emergency purposes) at any rate,

I was filling him in on the recent progress has

made both w/seizure control and w/development. Told

him that while his development hasn't taken off, I've

been recently encouraged by some bigger advances in

overall development. He then asked me if he was

talking and I said no, that he really doesn't use

words on a functional basis and he then hit me w/a

bombshell. He told me that he wanted to prepare me

for 's future - that he would probably need

special ed. services thru school and that he probably

wouldn't ever read or write. For the first time when

talking w/Dr.s I was speechless. I asked him why he

was prematurely predicting his future and he just said

that it was his experience w/kids who don't talk by

2.5, have had a turbulent seizure history, and who

don't show bigger strides in development after being

taken off meds - " typically " don't progress to the

stage where they can read/write. That whatever the

" underlying " cause of seizure activity is, it is

probably a wiring problem which is causing the delays.

With that said, I will obviously never step foot in

that man's office again (we've had words twice before

about premature diagnosis')and though I take what he

says w/a grain of salt - there is still a part of me

that wonders if what he says is true and that perhaps

I should prepare myself for that potential. I just

feel like I was hit in the gut - after being

cautiously optimistic about his recent progression.

Plus, we've only been 3.5-4 wks. without myoclonic

jerks.

OK - that's enough venting - thanks to all of you for

listening. I just don't understand how some Dr.s are

still in practice w/the unprofessionalism and

pessimistic attitudes.

(mom to - 2.5yrs. old - ketokid since

6/03 - med free since 3/27/04 - working on the seizure

free part but getting closer and closer.)

__________________________________

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" The Ketogenic Diet....a realistic treatment option, NOT just a last resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional keto

team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

I know that these stories are meant to encourage , but they are also

encouraging me! Shan, now 9, has never really been the greatest talker.

She does have her times when she can be articulate, but often she has

difficulty getting her thoughts out. When she was 3 years old I discovered

that even though she did not say much, there was a lot going on in her mind.

In other words, though she could not express her thoughts and feelings very

well she still thought and felt the same as children her age.

And for some added encouragement, Shan learned to read and write at age 6

when her seizures were at their worse, coming off meds, left side nearly

paralysed, extremely fatigued... I home schooled her during this time.

She has been in the public school (Australia) for 1 1/2 years and we have

decided to home school her again. She has lost a lot of ground during the

time she has been in the public school. It has been very stressful,

distracting and difficult for her to learn in a classroom setting. At this

particular school she has been attending the class rooms do a lot of group

learning and it tends to be noisy. This has proven to not be the ideal

learning environment for her.

She has always had a dream to become a nurse. I don't know at this time if

she will be able to accomplish that goal, but there is no way that I want

her to miss out on that goal or any other goal that she may change to

because she " fell through the cracks " at school or she was not taught in a

way that she was able to learn or someone says her intellectual test scores

say she doesn't have the ability. My husband and I will do whatever needs

to be done (including home schooling which I'd prefer not to do but will do

if necessary and possible) to give Shan the best chance in life.

Rhonda

[Guest guest]

Rhonda,and all the mummies,

I'm very sad today because my aël is 6 .It's always so paintfull this

anniversary...

aël can't have a goal in his life, he's just here I don't know why...I

love him a lot but it's so hard to see others children with dreams, goals and

pleasures...

I can't believe Nath is just a " vegetable " like doctors said, but I can't

believe enough he can understand or be happy....It seems to me I try to make

myself believe in something but Nath can't do anything, he's multi disabled...

Tonight he has had 12 t c seizures, I was hoping in a good day today like a

break but no way...

Take care of yours little angels and appreciate all the good moments they

offer you...

Carolyn, aël's mum

RE: Re: Ugh..another yucky Dr.s apt./

I know that these stories are meant to encourage , but they are also

encouraging me! Shan, now 9, has never really been the greatest talker.

She does have her times when she can be articulate, but often she has

difficulty getting her thoughts out. When she was 3 years old I discovered

that even though she did not say much, there was a lot going on in her mind.

In other words, though she could not express her thoughts and feelings very

well she still thought and felt the same as children her age.

And for some added encouragement, Shan learned to read and write at age 6

when her seizures were at their worse, coming off meds, left side nearly

paralysed, extremely fatigued... I home schooled her during this time.

She has been in the public school (Australia) for 1 1/2 years and we have

decided to home school her again. She has lost a lot of ground during the

time she has been in the public school. It has been very stressful,

distracting and difficult for her to learn in a classroom setting. At this

particular school she has been attending the class rooms do a lot of group

learning and it tends to be noisy. This has proven to not be the ideal

learning environment for her.

She has always had a dream to become a nurse. I don't know at this time if

she will be able to accomplish that goal, but there is no way that I want

her to miss out on that goal or any other goal that she may change to

because she " fell through the cracks " at school or she was not taught in a

way that she was able to learn or someone says her intellectual test scores

say she doesn't have the ability. My husband and I will do whatever needs

to be done (including home schooling which I'd prefer not to do but will do

if necessary and possible) to give Shan the best chance in life.

Rhonda

" The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

List is for parent to parent support only.

It is important to get medical advice from a professional

keto team!

Subscribe: ketogenic-subscribe

Unsubscribe: ketogenic-unsubscribe

[Guest guest]

,

You def need a different doctor.

When my mom was young and had her first kid the doctor told her she shouldn't

have anymoe kids because she had such a hard time. This was a long time ago.

She had 5 after that. If she had listened to the Doctor, I wouldn't be here.

Doctors are only human. The human body is wonderfully able to repair itself.

Our little grandson was having lots of seizures and couldn't talk at all. After

starting the diet the first of July he can now talk again. Everyone was

surprised. God can heal.

Hallie

Ugh..another yucky Dr.s apt./

I don't know if I'm more mad or upset. Just got back

from our local neuro. (only rarely consult w/him to

keep him updated for emergency purposes) at any rate,

I was filling him in on the recent progress has

made both w/seizure control and w/development. Told

him that while his development hasn't taken off, I've

been recently encouraged by some bigger advances in

overall development. He then asked me if he was

talking and I said no, that he really doesn't use

words on a functional basis and he then hit me w/a

bombshell. He told me that he wanted to prepare me

for 's future - that he would probably need

special ed. services thru school and that he probably

wouldn't ever read or write. For the first time when

talking w/Dr.s I was speechless. I asked him why he

was prematurely predicting his future and he just said

that it was his experience w/kids who don't talk by

2.5, have had a turbulent seizure history, and who

don't show bigger strides in development after being

taken off meds - " typically " don't progress to the

stage where they can read/write. That whatever the

" underlying " cause of seizure activity is, it is

probably a wiring problem which is causing the delays.

With that said, I will obviously never step foot in

that man's office again (we've had words twice before

about premature diagnosis')and though I take what he

says w/a grain of salt - there is still a part of me

that wonders if what he says is true and that perhaps

I should prepare myself for that potential. I just

feel like I was hit in the gut - after being

cautiously optimistic about his recent progression.

Plus, we've only been 3.5-4 wks. without myoclonic

jerks.

OK - that's enough venting - thanks to all of you for

listening. I just don't understand how some Dr.s are

still in practice w/the unprofessionalism and

pessimistic attitudes.

(mom to - 2.5yrs. old - ketokid since

6/03 - med free since 3/27/04 - working on the seizure

free part but getting closer and closer.)

__________________________________

[Guest guest]

Many thanks, for sharing Jess's story w/me!

Very encouraging to know she and Coop shared similar

backgrounds and Jess exceeded expectations. It sounds

like she is doing remarkably well and you are right,

w/services in place to promote learning and

development along w/supportive parents - the sky is

the limit. I do feel lucky, too, to live in a state

where Early Intervention Svcs. are a priority for kids

w/special needs. Our therapists are wonderful and

have high expectations for . Considering they

are in our house 2x each per wk. - and know

quite well, they, too are very encouraged w/his recent

progress. I feel in my gut that will be OK -

it still hurts to hear those words no matter how much

I try to dismiss it.

I printed the 10 commandments for parents w/ special

needs kids last night and my husband and I talked

about all of them thru dinner. I, too, will post them

on my fridge - they are very inspirational and ever so

true!

HUGS to ! I'm just still in awe that the wean

has gone so well for her! I'm sure she has never

enjoyed food so much.

--- mmc@... wrote:

>

> Jess fits exactly what you said, not talking at 2.5,

> turbulent seizure

> history, blah, blah.......she reads at grade level,

> prints, does cursive

> writing and types two handed.

> Now....that being said.......her comprehension is

> much below her reading

> level, both printing and cursive writing took nearly

> weekly sessions for

> a year with an OT and another OT for assistive tech

> for the typing.

> Do I think Coop will have problems at school?

> Probably.......

> Do I believe what the neuro said?? Nope

> Realistically, there is a good chance he will

> require special ed in

> school. But no one can say that for sure, and there

> is no way he can say

> with any authority that will never read and

> write. Thats

> crap.........but I bet I know where it came from.

> Years ago, kids like

> ours, he would probably be right. (I have two older

> sisters, in their

> 40s or older, severely challenged and

> institutionalized). But those kids

> didn't get the services back then that ours do now,

> my mother often

> laments that she didn't do for my sisters what I

> have done for Jess but

> I quickly remind her that she couldn't have - there

> wasn't the services

> or support back then that we have now.

>

> Never say Never

>

> Have you ever seen the Ten Commandments for the

> Parents of Special Needs

> Children? A bit of a cliche, some, but very

> true.....I have it on my

> fridge. Here are some of the better ones

>

> Take every day one day at a time and that day

> posisitvely. You don't

> have control over the future, over today or over any

> other day and

> neither does anyone else. Other people just think

> they do

>

> Never underestimate your child's potential. Allow

> him, encourage him and

> expect him to develop to the best of his abilities

>

> Find and allow positive mentors: parents and

> professionals who can share

> with you thier experience, advice and support

>

> My personal favourite and one I often mentally refer

> to:

> Answer only to your conscience: then you'll be able

> to answer to your

> child. You need not justify your actions to your

> friends or the public

> (and add to that " school personnel "

>

> Be honest with your feelings. You can't be a

> super-parent 24 hours a

> day. Allow yourself jealousy, anger, pity,

> frustration and depression in

> small amounts whenever necessary.

>

> Be kind to yourself. Don't focus continually on what

> needs to be done.

> Remember to look at what you have accomplished.

> (This is probably the

> one I find the hardest to do)

>

> Stop and smell the toses. Take advantage of the fac

> that you have gained

> a special appreciation for the little miracles in

> life that others take

> for granted.

>

> ((((( and )))))))

> , 's mom

>

> michelle paulson wrote:

>

> > I don't know if I'm more mad or upset. Just got

> back

> > from our local neuro. (only rarely consult w/him

> to

> > keep him updated for emergency purposes) at any

> rate,

> > I was filling him in on the recent progress

> has

> > made both w/seizure control and w/development.

> Told

> > him that while his development hasn't taken off,

> I've

> > been recently encouraged by some bigger advances

> in

> > overall development. He then asked me if he was

> > talking and I said no, that he really doesn't use

> > words on a functional basis and he then hit me w/a

> > bombshell. He told me that he wanted to prepare

> me

> > for 's future - that he would probably need

> > special ed. services thru school and that he

> probably

> > wouldn't ever read or write. For the first time

> when

> > talking w/Dr.s I was speechless. I asked him why

> he

> > was prematurely predicting his future and he just

> said

> > that it was his experience w/kids who don't talk

> by

> > 2.5, have had a turbulent seizure history, and who

> > don't show bigger strides in development after

> being

> > taken off meds - " typically " don't progress to the

> > stage where they can read/write. That whatever

> the

> > " underlying " cause of seizure activity is, it is

> > probably a wiring problem which is causing the

> delays.

> >

> >

> > With that said, I will obviously never step foot

> in

> > that man's office again (we've had words twice

> before

> > about premature diagnosis')and though I take what

> he

> > says w/a grain of salt - there is still a part of

> me

> > that wonders if what he says is true and that

> perhaps

> > I should prepare myself for that potential. I

> just

> > feel like I was hit in the gut - after being

> > cautiously optimistic about his recent

> progression.

> > Plus, we've only been 3.5-4 wks. without myoclonic

> > jerks.

> >

> > OK - that's enough venting - thanks to all of you

> for

> > listening. I just don't understand how some Dr.s

> are

> > still in practice w/the unprofessionalism and

> > pessimistic attitudes.

> >

> > (mom to - 2.5yrs. old - ketokid

> since

> > 6/03 - med free since 3/27/04 - working on the

> seizure

> > free part but getting closer and closer.)

> >

> >

> >

> > __________________________________

> > Do you Yahoo!?

> > Yahoo! Mail - Helps protect you from nasty

> viruses.

> > http://promotions.yahoo.com/new_mail

> >

> >

> > " The Ketogenic Diet....a realistic treatment

> option, NOT just a last

> > resort! "

> >

> > List is for parent to parent

> support only.

> > It is important to get medical

> advice from a

> > professional keto team!

> > Subscribe:

> ketogenic-subscribe

> > Unsubscribe:

> ketogenic-unsubscribe

> >

> >

> >

> >

> >

[Guest guest]

Hi -

I truly enjoyed hearing 's story. Thank you for

sharing.

I, too, am a special ed teacher (actually have a M.Ed

in Early Intervention) but taught high school for 3

years before I had my 4 children. Certainly, times

have changed for special needs children since I was in

school and now it is fun working/living in a state

that believes in providing children w/special needs

optimal services to promote development. I feel

incredibly lucky that has these services

available to him now.

You know, you said one thing that really stood out to

me - about our Dr.'s inability to help and his

decision to " write-him-off " . My husband and I have

often lamented about this Dr.s lack of

experience/knowledge to help him. We live in a very

rural area and this Dr. serves a tricounty area. I've

repeatedly asked him HOW MANY children 's age

w/similar history's he's worked with and he always

evades the question. I actually think he's

intimidated by me and avoids /myself as much as

possible and will even go as far as saying that I

believe he'd rather NOT have as a client b/c

there is really nothing he can offer (but premature

diagnosis')We've been seeing him now for 2 yrs. and I

can say that never have our apts. been worthwhile. I

only continue to keep apts. w/him to have him in case

of emergency's and to get prescriptions for Diastat.

However, after this last episode, I will be writing a

letter stating my dissatisfaction and will get the

prescriptions I need from my pediatrician.

You are right, no one knows the futures of our

children - we just take it one day at a time and love

them for who they are!

--- Falk frumpymumma@...> wrote:

> Dear

>

> I formerly was a special education teacher during

> the years when impaired children were in classrooms

> that were labelled according to primary disability.

> Now challenged children are mainstreamed with

> support staff assistance.

>

> Anyway, I had a dear sixth grader, . When she

> was born and as a baby her parents were told to

> institutionalize her. She was considered a

> " vegetable " by these professionals. Her parents

> opted to keep her at home. They worked with her and

> got her the few services that were available at that

> time. It was a long time ago, without the services

> that are now available to special needs children.

>

> Anyway, was kept at home and not

> institutionalized, and she became far from anything

> the doctors had predicted she would be. She was a

> darling girl. A fair student (You know, all

> students aren't at the top of the class!) A

> conscientous worker. I just loved having her in my

> class.

>

> Years later, after my father died, I had reason to

> speak with 's father, as he was my father's

> attorney. When I asked about , now in her mid

> thirties, I found out that she was assistant manager

> of a store and worked part time with the disabled.

> Not only was her life a success, but she was helping

> those who needed help!

>

> Only God knows our futures and what is ahead for our

> children. If we are dilligent to do what we know to

> do, that is all that is required. And what is

> " success? " How is it measured? How do we measure

> worth? Is a child with special needs worth less

> than one without?

>

> I would think that the doctor's inability to help

> your child caused the doctor to " write him off. "

> Instead of facing up to the fact that he did not

> have all the answers, it became your little boy's

> problem.

>

> We all have our children on this diet because they

> were not able to be helped with conventional

> methods. And, we are finding the diet to be a

> wonderful alternative to the drugs and all their

> side effects. The diet can be supplemented. The

> meds, we just watched for the side effects.

>

> Expect the best. Challenge and encourage, but don't

> frustrate your little one. He will grow and with

> maturity comes learning, and more learning, and more

> learning. God bless him.

>

> Blessings....... , mum to dear , age 5

>

> michelle paulson michelle101291@...> wrote:

> I don't know if I'm more mad or upset. Just got

> back

> from our local neuro. (only rarely consult w/him to

> keep him updated for emergency purposes) at any

> rate,

> I was filling him in on the recent progress

> has

> made both w/seizure control and w/development. Told

> him that while his development hasn't taken off,

> I've

> been recently encouraged by some bigger advances in

> overall development. He then asked me if he was

> talking and I said no, that he really doesn't use

> words on a functional basis and he then hit me w/a

> bombshell. He told me that he wanted to prepare me

> for 's future - that he would probably need

> special ed. services thru school and that he

> probably

> wouldn't ever read or write. For the first time

> when

> talking w/Dr.s I was speechless. I asked him why he

> was prematurely predicting his future and he just

> said

> that it was his experience w/kids who don't talk by

> 2.5, have had a turbulent seizure history, and who

> don't show bigger strides in development after being

> taken off meds - " typically " don't progress to the

> stage where they can read/write. That whatever the

> " underlying " cause of seizure activity is, it is

> probably a wiring problem which is causing the

> delays.

>

>

> With that said, I will obviously never step foot in

> that man's office again (we've had words twice

> before

> about premature diagnosis')and though I take what he

> says w/a grain of salt - there is still a part of me

> that wonders if what he says is true and that

> perhaps

> I should prepare myself for that potential. I just

> feel like I was hit in the gut - after being

> cautiously optimistic about his recent progression.

> Plus, we've only been 3.5-4 wks. without myoclonic

> jerks.

>

> OK - that's enough venting - thanks to all of you

> for

> listening. I just don't understand how some Dr.s

> are

> still in practice w/the unprofessionalism and

> pessimistic attitudes.

>

> (mom to - 2.5yrs. old - ketokid

> since

> 6/03 - med free since 3/27/04 - working on the

> seizure

> free part but getting closer and closer.)

>

>

>

> __________________________________

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>

>

> " The Ketogenic Diet....a realistic treatment

> option, NOT just a last resort! "

>

> List is for parent to parent

> support only.

> It is important to get medical

> advice from a professional keto team!

> Subscribe:

> ketogenic-subscribe

> Unsubscribe:

> ketogenic-unsubscribe

>

>

>

>

>

[Guest guest]

Always take heart... God gave that child to you, not to the doctor! Love,

.

michelle paulson michelle101291@...> wrote:Hi -

I truly enjoyed hearing 's story. Thank you for

sharing.

I, too, am a special ed teacher (actually have a M.Ed

in Early Intervention) but taught high school for 3

years before I had my 4 children. Certainly, times

have changed for special needs children since I was in

school and now it is fun working/living in a state

that believes in providing children w/special needs

optimal services to promote development. I feel

incredibly lucky that has these services

available to him now.

You know, you said one thing that really stood out to

me - about our Dr.'s inability to help and his

decision to " write-him-off " . My husband and I have

often lamented about this Dr.s lack of

experience/knowledge to help him. We live in a very

rural area and this Dr. serves a tricounty area. I've

repeatedly asked him HOW MANY children 's age

w/similar history's he's worked with and he always

evades the question. I actually think he's

intimidated by me and avoids /myself as much as

possible and will even go as far as saying that I

believe he'd rather NOT have as a client b/c

there is really nothing he can offer (but premature

diagnosis')We've been seeing him now for 2 yrs. and I

can say that never have our apts. been worthwhile. I

only continue to keep apts. w/him to have him in case

of emergency's and to get prescriptions for Diastat.

However, after this last episode, I will be writing a

letter stating my dissatisfaction and will get the

prescriptions I need from my pediatrician.

You are right, no one knows the futures of our

children - we just take it one day at a time and love

them for who they are!

--- Falk frumpymumma@...> wrote:

> Dear

>

> I formerly was a special education teacher during

> the years when impaired children were in classrooms

> that were labelled according to primary disability.

> Now challenged children are mainstreamed with

> support staff assistance.

>

> Anyway, I had a dear sixth grader, . When she

> was born and as a baby her parents were told to

> institutionalize her. She was considered a

> " vegetable " by these professionals. Her parents

> opted to keep her at home. They worked with her and

> got her the few services that were available at that

> time. It was a long time ago, without the services

> that are now available to special needs children.

>

> Anyway, was kept at home and not

> institutionalized, and she became far from anything

> the doctors had predicted she would be. She was a

> darling girl. A fair student (You know, all

> students aren't at the top of the class!) A

> conscientous worker. I just loved having her in my

> class.

>

> Years later, after my father died, I had reason to

> speak with 's father, as he was my father's

> attorney. When I asked about , now in her mid

> thirties, I found out that she was assistant manager

> of a store and worked part time with the disabled.

> Not only was her life a success, but she was helping

> those who needed help!

>

> Only God knows our futures and what is ahead for our

> children. If we are dilligent to do what we know to

> do, that is all that is required. And what is

> " success? " How is it measured? How do we measure

> worth? Is a child with special needs worth less

> than one without?

>

> I would think that the doctor's inability to help

> your child caused the doctor to " write him off. "

> Instead of facing up to the fact that he did not

> have all the answers, it became your little boy's

> problem.

>

> We all have our children on this diet because they

> were not able to be helped with conventional

> methods. And, we are finding the diet to be a

> wonderful alternative to the drugs and all their

> side effects. The diet can be supplemented. The

> meds, we just watched for the side effects.

>

> Expect the best. Challenge and encourage, but don't

> frustrate your little one. He will grow and with

> maturity comes learning, and more learning, and more

> learning. God bless him.

>

> Blessings....... , mum to dear , age 5

>

> michelle paulson michelle101291@...> wrote:

> I don't know if I'm more mad or upset. Just got

> back

> from our local neuro. (only rarely consult w/him to

> keep him updated for emergency purposes) at any

> rate,

> I was filling him in on the recent progress

> has

> made both w/seizure control and w/development. Told

> him that while his development hasn't taken off,

> I've

> been recently encouraged by some bigger advances in

> overall development. He then asked me if he was

> talking and I said no, that he really doesn't use

> words on a functional basis and he then hit me w/a

> bombshell. He told me that he wanted to prepare me

> for 's future - that he would probably need

> special ed. services thru school and that he

> probably

> wouldn't ever read or write. For the first time

> when

> talking w/Dr.s I was speechless. I asked him why he

> was prematurely predicting his future and he just

> said

> that it was his experience w/kids who don't talk by

> 2.5, have had a turbulent seizure history, and who

> don't show bigger strides in development after being

> taken off meds - " typically " don't progress to the

> stage where they can read/write. That whatever the

> " underlying " cause of seizure activity is, it is

> probably a wiring problem which is causing the

> delays.

>

>

> With that said, I will obviously never step foot in

> that man's office again (we've had words twice

> before

> about premature diagnosis')and though I take what he

> says w/a grain of salt - there is still a part of me

> that wonders if what he says is true and that

> perhaps

> I should prepare myself for that potential. I just

> feel like I was hit in the gut - after being

> cautiously optimistic about his recent progression.

> Plus, we've only been 3.5-4 wks. without myoclonic

> jerks.

>

> OK - that's enough venting - thanks to all of you

> for

> listening. I just don't understand how some Dr.s

> are

> still in practice w/the unprofessionalism and

> pessimistic attitudes.

>

> (mom to - 2.5yrs. old - ketokid

> since

> 6/03 - med free since 3/27/04 - working on the

> seizure

> free part but getting closer and closer.)

>

>

>

> __________________________________

> Do you Yahoo!?

> Yahoo! Mail - Helps protect you from nasty viruses.

> http://promotions.yahoo.com/new_mail

>

>

> " The Ketogenic Diet....a realistic treatment

> option, NOT just a last resort! "

>

> List is for parent to parent

> support only.

> It is important to get medical

> advice from a professional keto team!

> Subscribe:

> ketogenic-subscribe

> Unsubscribe:

> ketogenic-unsubscribe

>

>

>

>

>

[Guest guest]

Hi ,

I have been awol - hosp for a week to have my thyroid removed - ugh, but saw

this while looking thru all the emails....really sorry you had to go through a

revolting appt like that - how devastating

I hope you have taken heart from the replies you recieved, so many similar

experiences on here, many with positive outcomes...

Our situation here is/was sl different, later onset of seizures than ,

but def had speech issues - he was referred to therapy because he was not

really talking properly at age 2, in his case by the time the appt eventually

rolled round, he had started on his own, one of those kids who when they do

start, did it in sentences.

Then the seizures hit at age 3, and backwards went his speech again, well more

a standstill I guess you would say.

Like so many others on here though, he has forged ahead again now that we have

control, speech in leaps and bounds, just working now on some articulation

issues like 'th' etc, and he has zoomed ahead in reading too, from very few

sight words at the beg of the yr to too many to count now, and he can also now

sound words out phonetically that he doesn't recognise, in other words, learning

to read 'normally'.

If you had asked me a yr ago if I thought he would be sitting reading a book

today at age 7, my answer would have (reluctantly) been a resounding no.

I am sure his Drs would have agreed with me, I never really had the courage to

come straight out and ask their opinion....

One day at a time , easy to say I know, I used to want to thump people

who would say that to me but it is probably the simplest advice to follow at

this point.

Gotta keep the faith

----- Original Message -----

From: michelle paulson

I don't know if I'm more mad or upset. Just got back

from our local neuro. (only rarely consult w/him to

keep him updated for emergency purposes) at any rate,

I was filling him in on the recent progress has

made both w/seizure control and w/development. Told

him that while his development hasn't taken off, I've

been recently encouraged by some bigger advances in

overall development. He then asked me if he was

talking and I said no, that he really doesn't use

words on a functional basis and he then hit me w/a

bombshell. He told me that he wanted to prepare me

for 's future - that he would probably need

special ed. services thru